Heart surgeons give care from the heart

November 14, 2013 at 3:10 pm Leave a comment

When doctors in Uganda told Shamim Nanukose that her 4-year-old son, Edwin Mugerwa, had a hole in his heart they couldn’t fix, she was horrified. She cried, asked questions the doctors couldn’t answer, and refused to leave without a promise that they would look for help.

Not far away, in another district of eastern Uganda, Jannat Mukwana was likewise terrified when she got a similar diagnosis for her son, Nuashad Muwaya, not yet a year old.

Because there are so few doctors and so many who need care in her home country, the attention given to each patient is minimal, Shamim said, through an interpreter. She knew her son had a heart condition, but she didn’t understand exactly what was going on or what the options were: “It leaves you much more confused.”

Eventually, both mothers got help from Children’s Heart Project, a program of international Christian relief organization Samaritan’s Purse, which has brought more than 960 children to North America to receive life-saving heart surgery and treatment since 1997.

At the end of August, Children’s Heart Project paid for the boys and their mothers to travel to Penn State Hershey Children’s Hospital with an interpreter and identified a volunteer host family with the help of the First United Methodist Church in Hershey.

It was the first time either of the mothers had left their home country, let alone flown on an airplane.

“At first, it was scary that everything was going to be covered – I was afraid it was a scam because everybody back home asks you for money to do anything,” Jannat said, through an interpreter. “But you get to a point you are so desperate you decide if it is going to do us harm, we will die. But if we don’t do it, we may die anyway. So you start to trust.”

Reath and Carolyn Edwards of Hummelstown welcomed the five strangers into their home and made sure things were taken care of while the boys went through pre-surgical testing. The surgeries were delayed when doctors discovered Nuashad had an ear infection and Edwin needed treatment for malaria.

On September 13, pediatric cardiac surgeon Dr. Brian Clark of Children’s Heart Group at Penn State Hershey Children’s Hospital performed open heart surgery to close a ventricular septal defect, which is a hole between the two lower chambers of Nuashad’s heart, and fix an obstruction that was blocking blood flow to his lungs.

“It’s not something that is typically fatal in early childhood, but it does cut your life expectancy short and he would have suffered problems,” Clark said. “Now that it’s fixed, he should have a normal life expectancy.”

Edwin Mugerwa, age 4, and Nuashad Muwaya, age 1 on a playground at Penn State Hershey Medical Center after heart surgery.

Edwin Mugerwa, age 4, and Nuashad Muwaya, age 1 on a playground at Penn State Hershey Medical Center after heart surgery

Eleven days later, Dr. John L. Myers, chief of pediatric and congenital heart surgery, operated on Edwin. “There are some people who live to an old age with these holes, but they may suffer from enlargement of the heart, arrhythmias and stroke,” he said.

The Children’s Heart Group doctors chose Edwin and Nuashad from a list of children in need of surgery for congenital heart defects after a Penn State Hershey pediatric intensive care nurse — who volunteers with Children’s Heart Project — suggested the partnership.

Myers said they wanted to help children who needed straightforward procedures that would require short hospital stays and eliminate the need for further surgeries or treatment: “They shouldn’t need any long-term follow up.”

Both boys recovered quickly, spending only a few days each in the hospital. The mothers report that the formerly irritable children who constantly cried have been replaced with happy, high-energy youngsters. “Nuashad’s heartbeat has changed, his activity is higher and his appetite is greatly improved,” Jannat said.

Both mothers said they were taken aback when doctors pulled out charts and showed them pictures of a child’s heart, taking time to explain the diagnosis and what the surgery would do. “That doesn’t happen at home,”Shamim said. They were also impressed by the cleanliness of the facilities, the way pain is managed and the friendliness of those they have encountered.

The mothers’ comments are not new to Myers and Clark, who for the past 15 years, have traveled annually to Ecuador with a team of doctors and nurses to perform heart surgeries. To date, they have helped more than 300 children who would otherwise have gone without surgery. The doctors recently returned from their latest trip.

Clark said the partnership with Children’s Heart Project is great because the children in need are able to come to them, instead of having the doctors pack everything to set up in another country. ”It’s very convenient when we are able to do it here with all the infrastructure we already have in place,” he said.

Cindy Bonsall, director of Children’s Heart Project, said she is delighted by this first experience working with Penn State Hershey Children’s Hospital. “We are going to the best children’s hospitals in the country,” she said. “We hope this can be a longstanding relationship because there are obviously more children in need than we can handle.”

Myers said, “There is a personal satisfaction in knowing we helped a kid who maybe never would have been picked if we didn’t do this.”

The Edwards had traveled to other African countries, so they had some notion of what it might be like for the two young mothers to experience life in the United States before they volunteered to host the women, their children and their interpreter. But Reath Edwards said it was still shocking for he and his wife to realize how much Americans have compared to much of the rest of the world.

“The whole idea of water coming out of a faucet — and several faucets — was new to them,” Edwards said. “And they were surprised we were feeding birds when so many people in their country have trouble feeding their own families.”

The biggest shock was when they visited Hotel Hershey and the mothers saw the fountain where visitors had tossed coins.

Shamim said she enjoyed her time in Pennsylvania: “There is a lot of peace here. What is here doesn’t exist back home.” Still, she looked forward to getting back home to see her 10-year-old son, who was sent to live with his grandmother in the village during the trip. “We can enjoy our lives now. I am relieved that this has been dealt with.”

Jannat said: “I am very happy, as you can see. When God safely gets us back home, I am going to rejoice because my child is well.”

Jannat and her son Nuashad returned to Uganda in late October. Shamim and her son Edwin flew home earlier this month.

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